Myalgic Encephalomyelitis (ME) is a serious, systemic, acquired disease, classified by the World Health Organisation (WHO) as a neurological disorder since 1969, along with post-viral fatigue syndrome, and more recently chronic fatigue syndrome (WHO ICD-10 G93.3 / WHO ICD-11 8E49).

ME was first defined by Dr. Melvin Ramsay following an outbreak at the London Royal Free Hospital in July 1955. Similar cases and epidemics have been recorded since 1934 and ME has been known by many other names, including atypical polio.

ME is a multisystem disease involving muscle, brain, spinal cord, and dysfunction of immune, gastro-intestinal, endocrine, and cardiac systems. For more about ME see IiMER Awareness Leaflet and FAQs about ME.

People are permanently banned from donating blood if they have ever had a diagnosis of ME, PVFS, CFS, even if fully recovered.

Some 250,000 people are thought to have ME in the UK, but as figures aren’t kept as yet the exact number is unknown.

The effects of ME are debilitating at best and devastating at worst. 25% of sufferers are severely affected and 10% are children. In a UK study ME was found to be the biggest cause of long-term absence from school1. Some sufferers are so severely affected that they cannot move, speak or swallow.

The American FDA described ME as “a serious and life-threatening disease” in 2011 and in 2015 the Institute of Medicine (now Academy of Medicine) described it as “a systemic disease”.

The current status of services for people with ME and their families in the UK is poor with little knowledge of current biomedical research being applied and possible treatments not being made available to patients or healthcare staff. NICE guideline CG53 for ‘CFS/ME’ is currently under review and the treatment recommendations are unsafe.

People with ME need early and correct diagnosis, proper treatment, and advice. The dangers for people with ME having no proper clinical examination and no access to possible treatments is that the disease can develop into more severe forms with significant loss of functioning and sometimes loss of life.

There is also the danger of mis- or missed diagnosis – a common problem with people thought to suffer from ME. Studies at Newcastle University2 and St Bartholomew’s Hospital, London3 found that 40-49% of patients with a diagnosis of CFS/ME were misdiagnosed and some had other potentially treatable illnesses. Development of a reliable diagnostic biomarker and test for the disease is therefore a priority and would be of huge benefit to doctors and patients alike.

Patients with severe ME have been largely excluded from research and also from treatment as services have not been developed to meet their special needs and lack of research means that doctors have no evidence-based treatments to offer them. Invest in ME Research is changing this with the Centre of Excellence and severely ill patients are included in the biomedical research programme by obtaining the necessary samples at home visits.

There is a mounting body of scientific evidence of the biological processes at work in ME, but there has been no cohesive strategy for taking this research forward so that biomedical findings can translate into treatments of the root cause of the disease and perhaps even prevention – this of course is why we need your help.

Myalgic Encephalomyelitis is classified by the World Health Organisation in the chapter on Diseases of the Nervous System (neurological) currently at WHO ICD-11 8E49: post-viral fatigue syndrome, benign myalgic encephalomyelitis; chronic fatigue syndrome, and formerly at WHO ICD-10 G.93.3.

At Let’s Do It for ME we prefer to use the term ME. It keeps things simple and we think it is clear to our supporters what we mean by this term. The abbreviation ME/CFS comes from the Canadian Consensus Guidelines. Invest in ME Research are the official UK distributors for the Canadian Consensus Criteria Overview4 and use ME/CFS in relation to this document.

CRITERIA

Criteria for both ME and CFS have been developed in different countries over the years. In the UK, CFS/ME has become an umbrella diagnosis for patients whose similar symptoms may have quite different causes creating confusion for clinicians and researchers alike and a barrier to useful scientific progress.

In order to establish correct and early diagnosis there needs to be a standard clinical diagnosis method used throughout the country. The Canadian criteria are clinical guidelines which can also be used as a base for research criteria until improved protocols are developed.

The Invest in ME Research proposal for an examination and research facility includes a clinical biomedical lead consultant who would perform diagnosis using the Canadian Consensus Guidelines, perform a full examination using a standard clinical protocol and, once patients have been formally diagnosed as having ME, administer possible treatments and enable participation in biomedical research into the disease.

Using a standard diagnostic and clinical protocol the service would allow a model of care and appropriate care packages for people with severe presentations and to establish and co-ordinate a clinical network and disseminate best practice across that network. More information about ME at Frequently Asked Questions.

Let's Do It for ME is a patient-driven campaign to raise awareness of and vital funds for Invest in ME Research, a small UK charity with a Big Cause. Together, and with your help, we aim to establish a national strategy of biomedical research into myalgic encephalomyelitis (ME) and a Centre of Excellence for translational biomedical research into the disease at the University of East Anglia.

Our ultimate goal is for the findings of high quality research to result in a better understanding of the underlying pathology and in the development of appropriate treatments.